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Caffeine Controversy

by Suzanne Schreiner & r & "It appears I was determined and stubborn before I was even born." The first sentence of Elaine DeLack's book portends the Promethean struggle against the medical establishment that has defined her life.

DeLack's fight to force mainstream medicine to accept Prokarin, the treatment she developed for multiple sclerosis, is told -- in all its embattled detail -- in her self-published book, They Said It Didn't Make "Cents": MS -- The Prokarin Story. She'll be sharing that story with the Inland Northwest at three local appearances this week.

DeLack, a registered nurse and an MS sufferer herself since 1984, is sincere in her desire to bring to other MS patients the alleviation of symptoms that she claims for herself. In fact, she claims to have been free of all symptoms for eight years. She is adamant that there is scientific evidence to support her claims, though she acknowledges that Prokarin is not a cure for multiple sclerosis. As the title of the book suggests, she is unswerving in her belief that the National Multiple Sclerosis Society (NMSS) and the pharmaceutical industry have made MS into a "cash cow."

Not surprisingly, the MS research community sees things differently. DeLack's book reprints the bulletin issued in 1999 by the Washington Chapter of NMSS to respond to "the overwhelming number of requests for information about Prokarin." The verdict: "to date, there is no scientific basis for claims that this compound is effective in treating multiple sclerosis." The chapter's clinical advisors said the idea that Prokarin's compound of histamine and caffeine can improve MS symptoms, based on 1950s' studies, "is no longer accepted by the medical community."

They argued further that "there is no convincing evidence that vasodilators (such as histamine) or stimulants (such as caffeine) have a favorable effect on the natural course of MS." They warned that patients were being told to "stop their prescribed MS drugs, such as baclofen, or interferons, with potentially negative effects."

Finally, they called for placebo-controlled clinical research to substantiate any further claims about the compound's effectiveness, adding that "offers to conduct this research have been made to the makers of Prokarin; however, they have not started any controlled studies thus far."

Still, DeLack, who lives in western Washington, insists the NMSS is intent on thwarting her efforts: "It doesn't matter what I do. They're just not going to look at it. It's like throwing money into the wind." Though she says she once believed that drug companies and charities wanted to cure diseases, "Now, from what I have witnessed, I know that's not the case."

There is a whiff of conspiracy, of good versus evil, in DeLack's story -- a kind of Joan-of-Arc-takes-on-the-MS-establishment. Physicians who express interest and support initially, later back away mysteriously -- sometimes offering no explanation, other times saying their jobs or research funding have been threatened. The pharmaceutical companies are a good ol' boys club and don't like Prokarin because they can't patent either caffeine or histamine, both of which occur in nature.

DeLack also says she feels the presence of the divine in her quest. "Odd things have happened to me, since I started this process," she says. At important stages of her research, she felt "really good chills" and "some kind of a guidance." Every time she grew frustrated and wanted to give up, "the phone would ring" and an MS patient who had "heard through the grapevine" about Prokarin would be asking for her help. "In my mind, I always thought of it as divine intervention," she says.

Dr. Roy Kanter, a neurologist at Holy Family MS Center in Spokane, sticks to science and phrases his answers carefully when talking about Prokarin. "I use a complementary approach in treating MS," he says, but "there are limited reasons to use Prokarin." With fatigue, for example, "we have our patients use caffeine," but by the cup rather than by capsule. There are other medications to address fatigue as well. In his view, "the evidence doesn't indicate whether Prokarin is good, bad, or neutral. Patients come in with the idea that it is going to protect them from progression of their MS," he says, "but Prokarin has no effect on the progress of the disease."

Jana Kimpel is a Prokarin believer just the same. Kimpel, who grew up in Spokane, is one of about a thousand people diagnosed with the disease in the Inland Northwest, which has the second-highest rate of MS in the world. Washington state is considered a hotspot for the disease, in part because of its large Northern European and Scandinavian populations and, mysteriously, because people raised in northern latitudes contract MS in higher numbers. Kimpel has been taking Prokarin for more than two years. Describing herself as an energetic, cheerful person who had always "looked at life as a party," she was frightened at the toll her MS symptoms were taking on her life. A single woman who prized her independence, she was afraid for the future, saying, "I didn't want to be in a wheelchair."

Kimpel says she knows that Prokarin has helped her. Though she does walk with a slight limp, she says that bladder control has improved, she has better tolerance of heat and, most important, she has energy again. She compares Prokarin with the "ABC drugs," Avonex, Betaseron, and Copaxone, which are widely prescribed for MS. Copaxone, for example, requires daily injections and can cost well over $1,000 dollars a month -- and while it "supposedly keeps the disease from progressing," she says patients don't necessarily get relief from their symptoms. People in her MS support group reported bad side effects with Avonex. A newer drug, Rebif, produced similar complaints.

Kimpel says her experience before Prokarin is typical of other MS patients: "You get discouraged after a while, because there's no hope." These days, she says, "I feel great." She just wants other MS sufferers to hear about Prokarin and decide for themselves because, she says, "I want to bring hope to people."

Elaine DeLack will visit the Inland Northwest to discuss her book on Tuesday, July 19, at 7 pm at Auntie's Bookstore; on Wednesday, July 20, at 2 pm at the Coeur d'Alene Hastings; and on Wednesday, July 20, at 7 pm at the Spokane Valley Hastings.